Wish to be Normal: ALS/Mnd Patients’ Strategies to Advocate Themselves

This presentation aims to consider how ALS/MND (amyotrophic lateral sclerosis or motor neuron disease) patients deal with their own internalized ableism or the wish to be “normal.” Taking this into consideration, we will critically rethink some of the logic that drives disability studies.

ALS is a chronic illness that deprives patients of muscle (control). They lose their ability to walk, speak, and even breathe. Thus, ALS patients can be categorized as physically disabled persons. Although they are considered disabled, they often wish to be “cured” and become “normal” again. This gives rise to ask the question—does the existing logic of disability studies such as the social model of disability fail to empower them?

Through analysis of interview data researchers find that ALS patients use this logic in their own style along with their ableism. They find and use their invariable ability to empower themselves. For instance, a patient said that if only they get appropriate support, they can handle their daily life because they do not lose their cognitive ability. This logic is the same as the earlier one. Another patient also said that he stops walking on his feet and uses a wheelchair to rest his legs and maintain the ability to walk in case a treatment procedure for ALS is developed. He does not change his mind that ability should be maintained.

Paradoxically, ALS patients who gradually lose their ability do not develop logic that relativizes the value of ability but focus on the logic that acknowledges it. This finding implies that the logic of disability studies has to be reviewed to adjust to such a situation. Because some disabilities may be cured in the future, there may be many disabled persons who think that they should get more ability like ALS patients.